Still difficult symptoms 4 months in

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hi, had extensive bilateral PE in Feb one of which was a saddle. Diagnosed with dvt's in April. Went to see consultant today and was told basically live with it, your better it's all in your mind now!!! Feel very let down and made to feel a fraud, he told me in Feb I would be lucky to make it. I am still very tired, breathless and my leg is still turning purple.

basically have other people experienced these symptoms four months on, don't know if I'm asking to much of my body. Or should I just get a new doctor?

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  • Posted

    The responses you have had from your consultant are shocking.  I would insist on being referred to someone else because you have no confidence in your current one. 

    You also need to get another opinion on your leg, as you clearly still have problems with it.

    Good luck. Peter

    (I still can't believe his responses...)

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  • Posted

    Hi Jacqui. I had bilateral pe's diagnosed last August. The last 2 weeks I have noticed my breathing has improved. This is a long journey. I would have a good day and think I could do all sorts of jobs but then I would be really bad for a couple of days. You have to listen to your body. Only you can decide how you feel. I have doctors appointment tomorrow as I am suffering bad back pain now. Maybe lack of exercise but nothing seems to ease it. Good luck with your recovery.💐 By the way I am on Apixaban for life.

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    • Posted

      Hi Lizzie, thanks for your reply. I was initially told this would be a long journey as after the PE's my lungs developed Necrosis, so lung damage and now he says your fine? My voice has been effected due to the lung damage so frustrating as I cannot get across how annoyed he made me just sounds wispy, not to intimidating lol.

      i hope all goes well with your doctor and he can give you some relief from the pain. Good luck with your recovery. Am on Rivaroxaban for life.

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  • Posted

    I think I would go for a 2nd opinion to another Dr. I think he doesnt have a great attitude as a Dr, .

    Im sure 4 months may be normal.  I will know more when i go to cardiologist on Wed.

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  • Posted

    Sounds like you need a new doctor
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    • Posted

      Thanks Samantha the more I think about it the more I get angry time or a new doctor. Most frustrating thing is lung damage due to necrosis, so cannot convey how annoyed I am just sound breathy!
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  • Posted

    Hi jacqui,

    Not very professional  manners from your doctor but basically that's about it, have to learn to live with it, as some people have to be medicated for life due to being susceptible of PE's returning. I'm new to all this myself and I still have problems 2 months down the track after the diagnosis, I still have trouble with my left leg and a lot of breathlesness and feel tired all the time, my right leg is playing up now but nowhere near as bad as my left leg did.

    I'd be looking for a second opinion or even a new doctor if you're not happy, which is understandable if your not because there are other ways of telling patients it's a life long situation, doctors here have been 50 / 50 with me, I have come accross some with the same attitude that you have recieved and I have had others tell me that time will heal as everbody is different and heal at different speeds to others. I've been told the PE's that I have is putting a strain on the right side of my heart as I have had a lot of troponin rises lately, was given a sped up appointment with a cardiologist, even though it wasn't a waste of time as he doesn't work for the public health sector anymore and couldn't access my files from his system, he told me that PE's are only secondary to troponin rises as troponin is heart specific, if that makes sense to you ?

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    • Posted

      Hi Samuel, thanks for your reply. Yeah I am on Rivaroxaban for life now. I was warned by the nursing staff my doc could be very blunt. I suppose to be fair he didn't have my notes in front of him but that's just another unprofessional thing. I gave to say being able to come on here and read how others are coping is very helpful.

      good luck with heart appointment and your recovery

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  • Posted

    Hi Jacqui I had massive pe nearly five years ago still on warfarin but seeing Gp tomorrow to try alternative anticoagulant been told I will be on this long term as no apparent reasoning behind it. I was told at the time it is equivalent to having heart attack in your lung and the recuperation period to get back to normality was 12 months. I remember at the time I was very breathless and weak you just have to listen to your body and allow yourself to heal. Take it easy but stay mobile little steps at a time xx
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